I Hope You Never Understand

I Hope You Never Understand

Late last week I felt a thickening of my left breast tissue.   A small but noticeable lumpy bit that just managed to get more painful the more I poked and played with it.  I made an unscheduled visit to my doctor, followed by a lengthy mammogram, and ultrasound.  At least some relief was given to me at the appointment and although nothing was found in the left breast a fibroadenoma was found in the right. This will require some monitoring due to my history and genetics as Lynch Syndrome also carries a slighter higher risk of breast cancer.  Yet another reminder that no matter how positive I am, how healthy I live, how self aware and #ultraspiritual I feel there are just some things that I cannot control.   It doesn’t seem to matter if I’m a good person , a bad person or something in between. Sometimes shit just happens. 

 

Having gone through an enormous life changing experience in 2011 I  know I have grown and changed in so many ways.  My family is the most precious gift I have.  Watching my children grow up is such a blessing that many of my cancer friends will never get.  Every year that ticks past, and every photo that I can get with Santa fills my heart with so much gratitude.  I have focused and continue to develop in my craft and work at it every day.  My art has been at the forefront of my ability to heal, help and express myself.   I also devote my time to helping others to connect and give a platform to so many out there that also live life without a stomach.  I have used the last 4 ½ years positively, productively and creatively in the hope to better understand myself and what I have to offer the world.
My ability to discern which relationships I allow into my life is extremely important and anything I feel is toxic just has to go, no question. When you are sitting in a doctors office waiting for test results you are not thinking about what the mums at school are saying, or what sale you might be missing out on.  You are worried about your kids, your husband, yourself .  You worry about how you and your family are going to cope. How you are going to stay positive? How you are going to get through this?   You ponder on the what ifs, no matter how hard you try not to.  The anxiety and anticipation of an outcome you cannot control is the scariest thing you can possibly imagine.  It shakes you to your very core and nothing else matters to you accept those that are close to your heart.  
I feel like I am continuously being grounded and reminded of what matters most. As much as I can appreciate the experience from a spiritual awakening sense, from a human perspective it is absolutely exhausting. And this isn’t just a little bump in the road, I have to live like this for the rest of my life.  I have been reminded this week that no matter how much I put the cancer behind me there is always, always going to be a percentage of it on my mind.  Every lump, every blood test, every scan brings another wave of anxiety that unless you have experienced it, you can never possibly understand it.  
Why wear a dress if it doesn’t fit you anymore?  Of course you might put up with it for a while but you will eventually get to a point where you think “I need to let that go that, it doesn’t fit me anymore”. Nothing has changed with the dress, it’s exactly the same as when you first purchased it. Its you that’s changed. 
If you were once a part of my life and are no longer then it’s nothing personal.  Seriously, it’s got nothing to do with you, it just means that you are no longer a reflection of me. Why wear a dress if it doesn’t fit you anymore?  Of course you might put up with it for a while but you will eventually get to a point where you think “I need to let that go that, it doesn’t fit me anymore”. Nothing has changed with the dress, it’s exactly the same as when you first purchased it. It’s you that’s changed.  We all have our light bulb moments, the ones that put our lives into perspective.  Well, my life seems to be one massive light bulb!   Your perspective on life is based on your own personal experiences, your truth, your belief systems and I respect that, but it also means my experiences have evolved me to a point where I have outgrown you. It doesn’t mean I think I am better than you, it just means that I am very selective about who I allow into my life and the energy they bring. I truly hope you never understand, but if one day you do then you might appreciate just a taste of what its like walking in my shoes.    
Through My Fathers Eyes

Through My Fathers Eyes


I remember getting alot of adult attention after my father’s death.  A steady stream of people flowed through our family home bearing food and gifts to cheer us up. I guess it worked because I cannot remember being a grief stricken child. At school my art design was chosen for the Christmas card competition (and it wasn’t very good!). I was given leading roles at my ballet school and my teachers were nice, caring and generally overcompensating especially around the father’s day celebrations. I was never given a real opportunity to grieve the loss because everyone around me always wanted to make me happy.
The earliest recollection of my father being sick was visiting him in hospital.  I remember that visit because I buried my head in his overnight bag so I didn’t have to watch the nurse change his drip.  He thought it was extremely funny, although my fear of needles lasted for the next 27 years!   One day I sat on his knee and looked him right in the eyes.  ‘Dad’ I asked, “Are you going to die?’  My father had been diagnosed with terminal bowel cancer.   How do you tell a 6 year old the truth without breaking her little heart, so of course my Dad lied ‘No Princess, I’m not going to die’.  When he passed in 1978 at the age of 36, I was 6 years old and my little baby brother was 4. 
The magic in life just seemed to slowly disappear.  Quite suddenly as everyone got back to their own lives things got hard.  I not only lost my Dad that day, I lost a part of my mum as well. As I grew older I became angry and resentful that my father had not only died but lied. I was never able to let go of the hurt although my adult logic knew why he done what he had done. I guess you can never really appreciate what someone is experiencing until you experience it yourself. 
When I was 39 years old with young children of my own  I was diagnosed with stage 3 stomach cancer.  The frightened little girl, who stuck her head in the overnight bag resurfaced.  I was given an opportunity to see my father’s diagnosis through my own eyes and I was finally able to grieve the loss of my father.  I would look into my babies eyes at night and feel the overwhelming sadness and heartache my father must have felt knowing he was not going to see us grow up.  I cherished every moment with my family, not knowing if I was heading into the same terminal diagnosis.  The time I was able to sit on the floor and play with my boys became ever so precious.  My husband became my career, my strength and support. He took over the running of the house to the organizing of everyone’s life.  I only had one job, to get myself well so I could give my boys the opportunity to have what I never had growing up, two parents.  My surgery was successful and after months of chemo, radiation and healing I was given a second chance at life. 
Four years after my surgery and 37 years of my father resting up at the crematorium my mother decided it was time to scatter his ashes.   I think we all would love one more day with a loved one that has passed and I feel so blessed at having had the opportunity. Even though I always know he is with me in spirit, I had a physical connection and something to hold onto for one more day.  His urn lay next to me while I watched TV, I held him in my bed and cried.  I told him how much I love and missed him, and he spent his last physical night watching over me from my bedside table.  I got to hold him in my hands again as my mum and I scattered his ashes in the sea and I now keep his plaque in my garden.  I felt life come full circle and I was finally able to put some closure on the funeral I did not attend as a child. 
My experience with cancer allowed me to open up and release the part of me that needed to let go.  I still feel sadness even while I re-read this blog. I don’t think that will ever go away but the anger and the sense of being robbed of my childhood no longer has a place in my heart. 
 
Michelle Lykokapis
Stomach Cancer Survivor
I Have Lynch Syndrome

I Have Lynch Syndrome

I was a normal six year old girl enjoying a carefree life, laughing with my friends, and starting my second year at primary school. I was Daddy’s little princess and my life literally changed overnight. My childhood was ripped away from me and the harsh reality of Dad’s death stole my innocence. It all seemed to happen so fast — my tiny little head did not have time to take in the reality of it all. Having been diagnosed in December of 1977 with a secondary bowel cancer, my Dad died four months later at the age of 36 in April 1978. After my Dad’s death, I was thrown into a world of grief; I no longer had my Dad to comfort and to hug me. I no longer had my Dad to read me bedtime stories, to tuck me into bed at night, to praise me after my ballet concerts, or to hold my little hand when we went for a walk. Unbeknownst to me at the time, my Dad had Lynch syndrome.

Experiencing the death of a parent at a young age is certainly a character building experience and can be the catalyst for a young girl to develop “daddy issues”. These daddy issues manifested themselves in the form of  manipulation and promiscuous behaviors during my teenage years. I sought father figures in all my male relationships throughout my twenties, which only led to broken partnerships and a failed marriage. Independence was my armor and I gave power to the masculine side of myself and not necessarily in a healthy or productive way. I consciously quelled the very essence of my feminine side down. I feared I was weak, could easily be hurt, and was vulnerable — I was a survivor who needed to be in control.

My second marriage came with its own set of challenges. Despite our backgrounds and former spouses, our union seemed strong but after ten years of financial pressure, challenging teenage stepchildren and two babies of our own I had started seeking a way out. I began with riding my bike taking every opportunity to escape. I had commenced self-development class once a week in the hope of rediscovering myself, picked up a part-time job, which got me out of the house mainly at nights and on weekends because blended family time was finally taking its toll. I just couldn’t do it anymore. It broke my heart to be despised in my own home every fortnight; I was at a complete loss. The environment around me was becoming so toxic and I didn’t know how to fix it. If I really wanted to self sabotage my life the Universe was about to give me a permanent way out if I chose to accept it.

You know when you just know certain things? Well, my intuition knew that I had cancer even before the doctor’s appointment. My husband and I went up to the mountains and sat quietly in a little tea house. We held hands, cried and made a promise to each other that no matter what the diagnosis we would get through it together. We walked to a small gift shop and I was drawn to purchase a beautiful aquamarine pendant. I didn’t know at the time but the benefit of using this crystal is that it aids you to let go of emotional issues from your past that you have been holding on to. When I paid for the pendant we started talking to the owner of the shop, she just happened to ask what my star sign was. When the word “Cancer” fell out of my mouth I just knew the heaviness in my heart was a fear I wasn’t sure I was strong enough to face. It wasn’t just my star sign, that same afternoon my doctor confirmed I had stomach cancer.

 During treatment and surgery something beautiful happened. That little girl that lost her Father resurfaced. She finally had an opportunity to grieve the loss of her Dad. She looked into her own children’s eyes at night and felt the heartache her Dad must have felt, knowing he was not going to see her grow up. She had time to sit on the floor and play with her boys. She had to hand all the masculine stuff over to her husband from the running of the house to the organising of everyone’s life. She only had one job – to get her adult self well so she could love and guide her little boys into men. The cancer diagnosis exposed the my feminine side that had been so carefully hidden high in my subconscious for so long, had finally re-emerged, and spilled back over into my life.

I took my power back, faced my own mortality, beat the statistics, and chose to live a life of self awareness. My feminine side was not to be feared. She is kind, nurturing, creative, healing, and most of all incredibly powerful. Allowing the creative side of myself to explore my emotions through art was my modality for healing during my illness. Painting was my passion prior to my illness but the work I was starting to produce began surprising me.

Yes, I have Lynch syndrome, but it does not take over every thought of every minute of my life. I am not my genes and I am most certainly not the cancer. I have used the experience to empower my life and to make a difference. I count, I am a survivor but I am also a creator, a healer, a mother and a wife. I am grateful for the knowledge of my genetics because I can now be a proactive, a happier person who doesn’t sit in drama or sweat the small stuff. My perspective and ability to bring hope and healing to others through my experience and my artwork has changed my life. The cancer and the Lynch syndrome diagnosis have opened my eyes, saved my marriage and awakened me to possibilities far beyond anything I could have ever imagined.

Michelle Lykokapis
Melbourne, Australia
http://michellepotter.com.au